I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
MS Awareness Week 2018 is drawing to a close – thank you so much for all your support!
Over the past few days our supporters have been making their voices heard and spreading the word of our newest national service, MS-UK Counselling.
We at MS-UK would like to thank everyone who championed our message that it’s ‘good to talk’ by sharing our posts on Facebook and Twitter, reading our blog, and opening up about life with multiple sclerosis (MS).
With your help, counsellors like Jonathan hope to be able to reach out to as many people across the UK affected by MS.
We at MS-UK are inclined to agree. This year, inspired by the recent launch of our MS-UK Counselling service and MS Awareness Week 2018, we're praising the power of talk. We believe that the simple act of opening up to someone who'll listen can have a hugely beneficial impact on a person's wellbeing and quality of life.
We sat down with MS-UK counsellor Jonathan who told us what he finds most rewarding about being able to lend an ear to those in the MS community.
We at MS-UK believe that giving people the opportunity to open up and talk about life with MS is just as valuable as any physical support. The simple act of listening to people’s worries and concerns – no matter how big or small they might believe them to be – can have a hugely positive impact on both mental wellbeing and quality of life.
Since launching the pilot of our counselling service in October 2017, our counsellors have reached out to over 150 people affected by multiple sclerosis (MS). But our aim is to lend an ear to even more. Over this week the vital work of the counselling team will be taking centre stage. We want to raise awareness of the service for those who need it in the MS community across the UK, discuss the many benefits of counselling, and help smash the stigma that may still surround mental health.
And you can get involved too! We’ve put together a list of five different ways you can make your voice heard during MS Awareness Week and help us spread the word of MS-UK...
1. Engage with MS-UK on social media
2. Share your own counselling experiences
There’s no shame in seeking out counselling services – 1 in 4 adults in the UK are affected by mental health issues after all – but some people are still afraid to talk. Share your own counselling stories with us using the hashtag #MSAwarenessWeek and you might inspire someone else to do the same.
3. Share info about MS-UK Counselling with your MS nurse
Does your MS nurse know about the MS-UK Counselling service? Why not talk to them and see if it’s something they might consider referring to in the future. You can also request some MS-UK Counselling leaflets by emailing our team at firstname.lastname@example.org
4. Have a chat over a cup of tea
There’s nothing better than a bit of banter over a cup of tea and Victoria sponge! Why not celebrate MS Awareness Week by getting together with friends and talking about multiple sclerosis? After all, it’s good to talk!
5. Download our MS Awareness Week resources
You can show your support for MS Awareness Week and jazz up your Facebook and Twitter profiles at the same time by downloading our MS Awareness Week resources! Check out our blog and follow the instructions to get your hands on a brand new banner.
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!